One Little Boy's Battle with Dravet Syndrome

The Prince

Aiden is....

A crazy little man. He charms everyone he meets with his sweetness and gentleness, yet he can tackle his brothers in one fell swoop. He loves with all his heart, smiles with all his body, and fears nothing. He also has Dravet Syndrome. He is an amazing little guy who has been through more in his 5 years than many of us have in our entire lives. Perhaps his greatest gifts are his unrestricted hugs and kisses. He wraps his little arms around the back of your neck and presses his soft cheek to yours, and at an age when many children are establishing their independence, he remains a cuddly, affectionate, heart-on-his-sleeve toddler.

It is our hope that by establishing this site we can keep friends and family up to date on his journey, as well as serve as an information center for other families who have young children with undiagnosed epilepsy syndromes. Because Dravet Syndrome is so rare and unknown, it took 2 years after his first seizure for doctors to diagnose him, during which time he was on contraindicated medications for the syndrome which made his seizures worse and slowed his development. Unbeknownst to us, he was at increased risk of death (SUDEP) while he slept. We hope to be able to raise awareness of this devastating disease to help other children receive an early diagnosis and the support they need.